The 2018 Winter Olympics just concluded. If you watched the skiers or the bobsledders before their runs they would typically be off to the side in a meditative state rehearsing the course. They had memorized each twist and turn and their minds and bodies knew what to expect, being prepared for each upcoming curve, angle, or zig zag. Of course at times there would be variables such as the weather changing the consistency of the snow or ice, or a random squirrel showing up on the course 🙂 But aside from external factors which could throw off their time by a hundredth of a second or so, influencing the outcome of the race, the fact is they all knew the course. They knew what was coming and they were familiar with the run because they had done it before. And barring any tragic fall or equipment malfunction they all finished.

But here’s the thing with grief. Time and practice do not help. Because the course is constantly changing. Once you think you have become familiar with the ebb and flow or the twists and turns of the grief course you are catapulted into foreign terrain. So here I am standing at the pinnacle of year six ready to fly down the icy mountain toward year seven relying on my memory and practice of how I veered through the course at year one, or two or three or four or five, and I look down and realize this is a completely different mountain. I don’t recognize anything because I’ve never been here before. But I am thrust forward nonetheless. Some years I get lucky and I stay upright, make good time and even enjoy the view. I may slow down or even wipe out but am able to get back up and make my way down to the bottom of the slope. But some years I don’t even get out of the gate. I stand paralyzed with fear or am just numb, not even aware of how my legs are holding me up. Or I head down the hill with confidence only to be blindsided by an unwelcome obstacle that knocks the wind out of me and suddenly I am buried by an avalanche struggling to even breathe.

I know people mean well, but time does not heal all wounds. Trauma does not exist within the framework of time. My body is unaware that six years have passed. My body senses the position of the sun and connects the dots to recall the trauma that occurred on March 1, 2012 at 3:06 a.m. and suddenly my body is hurled back to that moment in time. My chest is heavy, it is difficult to breathe, I feel exhausted from lack of sleep and caregiving around the clock for my dying daughter, the lymphedema in my left arm throbs as a reminder of my surgery and radiation for breast cancer which was occurring during that time frame, my heart races with anxiety as I face a new unknown life of living without my youngest child. And just because I have already done this for six entire years does not mean I know how to do it for even one more day. But life goes on and somehow so will I. Hopefully writing this will help lift the burden slightly and unlock the paralysis so I can once again venture down yet another mountain of grief and make it to the bottom only to be towed back to the top to do it all over again.

Ever have one of those days when it feels like everything is a dead-end? The person you need an email response from has an auto reply “out of office,” the website you need to make critical updates on is down, important phone calls are all met with voice mail recordings…I think you get my drift.

Well I feel like I have been stuck in a dead-end for the last several months. I think it began at the 5 year anniversary of Claire’s death on March 1 when I realized, “I don’t know how to do this anymore.” Prior to that I had felt like I was beginning to get a handle on the grief thing. I thought I understood the ebbs and flows, I knew to “ride the wave” of grief, I comprehended that it had a mind of its own, etc. But something happened at the five-year mark. I don’t even know what and I don’t know how to put it into words. I just knew I felt different and it was unfamiliar territory and I did not know how to navigate it – and still don’t.

So here I am, wandering around in the dark, running into dead-end after dead-end.

I feel the incredible pain and anguish of grief bubbling up inside me, just on the cusp of breaking loose, but it stops short. Dead End.

I sit down to write but my muse is MIA and words are unable to appear on the page. Dead End.

I attempt to prepare for a class I am teaching this summer but thoughts and ideas elude me and my brain can’t seem to comprehend simple words and concepts as I try to read relevant information. Dead End.

I carefully count my calories each day and put in my required 5-6 workouts per week only to see the scale stuck in place month after month. Dead End.

I feel overwhelmed with sadness at the state of our country with all its injustices and inequities, but feel powerless and lack energy to make a difference. Dead End.

The thing about a Dead End is there is no outlet. That is not good. At the risk of becoming too graphic in my use of metaphor, if we are unable to expel the waste after ingesting food, it becomes toxic and can kill us. It needs a way out. Or I think about the health of rivers due to the flow –water comes in and it goes out. As opposed to a body of water which is closed off and becomes stagnant. I feel that my flow is blocked but I don’t know how to break it open. Do I blast it open with a stick of dynamite? Do I chip away slowly like Andy Dufresne in The Shawshank Redemption? Do I back my way out the way I came in and look for another route? Is any of that even possible?

One of the most irritating things for me to hear in my grief journey is the old adage that “Time heals all wounds.” I want to cry “Bullshit!” Time can make the wounds go deeper. It creates new wounds. Claire has never had the chance to meet her new brother-in-law. She wasn’t able to attend the weddings of her father or her mother to their new spouses. She has never seen the house I live in. Life goes on but she is not here to experience it with us. And that is not okay with me. It never will be. How do I maintain my sanity while trying to move forward in a time where she doesn’t exist in physical form while hanging on to a past in which she did? And who would she be as a 23-year-old young woman? Would she like whisky or vodka or neither? Would she have a boyfriend? A girlfriend? Would she live on her own or with roommates? Or with us? What career would she have? Would she have been standing on I-94 last night making her voice heard for justice and equality? Or would she quietly express herself in a different way? WE DON’T KNOW AND WE NEVER WILL! And that frankly feels like a big fucking DEAD END. Literally.

On a lighter note, this picture was taken several years ago while Dan and I were visiting his dad and step-mom down in Florida. We had a good laugh at the indisputable connotation of that intersection, probably both secretly wondering if it were some sort of omen regarding our own relationship. I insisted on snapping a picture with him posing proudly, possibly inferring that this was his personal mantra. But here we are some eight years later still happily residing on our own Lovers Lane. So I guess not everything is a Dead End. And that is what keeps me going. And maybe remembering that will help things start to flow again.

I feel it first in my body. Something about the warmth of the air or the position of the sun or the smell of summer that triggers my body into a panic response. I feel the anxiety building, first with a knot in the pit of my stomach and then the tightness in my chest and then the sense of dread, fear, and sadness all rolled into one accompanied by the distinct realization of complete powerlessness and finally erupting into a volcano of emotions begging to be released through tears but held at bay until I am able to find a safe, secluded place.

This all occurs instantaneously before my mind catches up to remember the date. Oh yeah, it’s June 21. That’s what is going on. Here we go again. Six years later I relive the day my life was forever changed. The day I took my sixteen-year-old daughter Claire to the Emergency Room. Nothing would ever be the same again. Nothing.

I feel pulled back to that day and want to be there again. Because Claire was still here then. Because maybe if I could go back knowing what I know now things would have turned out differently. Maybe because I want to go back to not knowing what was about to happen? Maybe because hope (and denial) existed then.

But because it is six years later I now know everything that did happen. So I am not only taken back to the day, but to the pain, struggle and trauma of the following years which started with that day:

Learning about the disease Rhabdomyosarcoma, and that Claire had the worst type, Alveolar, and that hers was stage IV, and that older kids had less of a chance than younger ones. Watching her cry as her golden locks fell out and never returned. The emotional roller coaster of scans – feeling hopeful when the tumors shrank and feeling devastated when the cancer returned and took over. Being treated for my own breast cancer and going to radiation on the day she died, informing the staff (who also knew her from her own treatments) that she had passed. Attending her high school graduation and hearing her name called but not seeing her walk across the stage; my eyes burning with tears as her whole class gave her a standing ovation. Learning to live with the endless grief and hole in my heart and then learning to enjoy life again, but always in a different way. Standing beside my husband while he lost his only son at the age of 23. And now, just days ago, he said his final goodbye to his dear mother.

So I will honor this day as best I can, allowing the anxiety and emotion to ebb and flow, crying with the painful memories, smiling and laughing with the good ones, and giving Raja special food today, her birthday. The actual date is unknown to us, but Claire decided this was the date we should celebrate the birth of her precious kitty instead of focusing on how it was the date that changed her life forever. June 21.

Woke up this morning from a dream where Claire had died but was alive again and had a second chance. The only thing that might save her this time is if I took her place and died. So I got hooked up to the IV which would push the lethal drugs through my body but then she died anyway. For some reason everyone else still wanted me to go through with it. I started freaking out and screaming that I didn’t want to do it anymore because I still wanted to live and it was too late for me to save her anyway. But people were upset with me because of my decision. I didn’t care and I just threw myself on the ground and sobbed because my baby was dead.

Good morning. And so the day begins. Takes me a while to shake off the horrible sense of fear and helplessness caused by the dream but so what else is new? First task of the day to complete the paperwork for my jury summons. Great. They want me to serve the week we have a vacation planned. I ask to be excused but only after being traumatized once more when I have to fill in the blanks on the questionnaire answering: Ages of Children: (1) ______ (2) ______ (3) _______ (4) ______ (5) ______. FUCK! I fill in the appropriate ages for my three living children while screaming inside “I HAVE FOUR CHILDREN!” For a moment I consider filling in the fourth with “18 but deceased” and then realize how ridiculous that is. I think to myself that this should be an essay question, not one constrained to a couple of numbers. I wonder, “Why the hell do they need to know how old my children are?” I go on to the next section feeling as though I have betrayed my youngest child by leaving her off the list and not making her existence known to the government representatives; strangers who have reopened my wounds and intrusively made their way into my most personal story without even knowing or caring.

Next I make my way to get my hair done, ready for a change of style. In trying to explain what I might like I realize Claire’s hair was a lot like mine and hers always looked so cute (when she had hair). I pull out my phone to show my stylist Claire’s face (and hairstyle) which is the screen saver on my phone. This and other photos of her are my only means to be warmed by her smile or look into her bright eyes. A comforting yet painful reality I deal with on a daily basis. So what else is new?

I shove down my sadness and tears because I need to shift focus before I get to work so that I am able to be fully present with my clients as I bear witness to their own painful stories, traumatic events and small and large successes. In the middle of one session I make the split decision to share the fact that I have lost a daughter to cancer, believing in the moment it will be of therapeutic benefit to the client. But after the session is over I doubt myself and wonder if that was the right choice or not. I tell myself it is ultimately okay because if nothing else, they will know I am human and have experienced great loss, which hopefully will increase their trust in me as their therapist and not diminish it. It is, after all, my reality and makes me who I am.

Driving home, feeling the warm summer air lifts my spirits and causes a deep stabbing pain in the same breath as I anticipate the anniversary of Claire’s diagnosis in a couple weeks; the weather and position of the sun always remind me of that summer evening in 2010 even before my brain remembers the date.

I get home to be greeted by Claire’s cat Raja waiting for me in the window. I open the refrigerator whose door is covered with pictures of all my kids and Claire at various ages. I sit down in the living room and she stares back at me from her framed senior picture.

I walk down my hallway to be greeted by her large canvas painting self-portrait. I watch Raja jump up at things that don’t seem to be there and run from room to room as though she is chasing an invisible string. I choose to believe Claire is playing with her, which makes me want to laugh and cry in the same moment.

(So I wrote this last year [2015]. Overall I still feel the same way however I discovered that while last year I took offense to finding out we had a special day and didn’t want to be singled out, this year I find myself feeling slightly glum because no one has acknowledged the day to me. Not a big deal, really. Just a passing thought. Sigh. Such is the hypersensitive, contradictory, enigmatic, unpredictable life of the grieving mom.)

Apparently the first Sunday in May is International Bereaved Mother’s Day. One of my friends reached out to me to tell me she was thinking of me on this special day, but I was completely unaware of its existence. My initial response to her was, “Every day is bereaved mother’s day for me.” I don’t know much about who founded this day or why but I did discover it is relatively new. I imagine the intention in creating this day to acknowledge bereaved moms was out of a compassionate place, but to be honest, I’m not sure how I feel about it. I mean Mother’s Day is next week. I still am a mother even though I have lost a child. Obviously the celebration of Mother’s Day for a bereaved mom can be a painful reminder of our loss, but do we really need our own day? When you lose a child you suddenly gain membership to this club that no one wants to be a part of and it often feels isolating. People feel awkward around us. They don’t know what to do or say. Sometimes it is easier for us to be excluded from normal activities because people don’t know how to handle us. Like we have some kind of contagious disease or something. People are afraid of saying the wrong thing or hurting us. What they don’t realize is it does not hurt us more to be reminded of our loss. We feel our grief all the time. If someone says our child’s name or talks about them it doesn’t make us sad because it reminds us of our loss (like we could forget…), it actually makes us feel better to know that our child is not forgotten. Life does go on and it can be healing for us to be able to see our child’s friends grow up and hear about what they are doing. Is it painful? Absolutely! But everything is painful after losing a child! As a bereaved mom, however, we need to be the ones to decide if we can handle it or not. Please do not decide for us. So when I hear about a special day for bereaved moms, a part of me feels excluded once again. Like when you lose a child regular Mother’s Day isn’t for you anymore. I am sure that whoever invented this thing did not mean for us to feel excluded, rather acknowledged and honored, but grief has a way of creating hypersensitivity, especially when you get used to experiencing subtle (and sometimes not so subtle) rejection time and time again after losing a child. Whether it be a friend who can’t be your friend anymore because your loss is too much for them to bear, or not being invited anymore to girls’ night out or play group or family gatherings. As if it’s not bad enough to face the death of your child, oftentimes more loss follows – loss of friends, loss of family, loss of identity, loss of belonging. So I’m not sure how I feel about International Bereaved Mother’s Day. I don’t really want to be acknowledged as a bereaved mom. I want to be acknowledged as a mom who loves her kids, dead or alive, and I’d like to know that my child who has passed is still remembered. The best thing you can do for a bereaved mom on this day or any day is to say their child’s name and that you remember. Tell them how their child’s life made a difference. Share a memory or a funny story about their child. Don’t exclude them. Invite them. And let them decide if they can handle joining in. And if they are having a hard day and can’t, be kind and patient and invite them the next time.

So now I know that there is such a thing as International Bereaved Mother’s Day. Maybe next year I will feel differently and I will embrace the day. But for now I will celebrate regular Mother’s Day feeling thankful for all four of my children, including the one who is with me only in spirit.

My daughter Claire is dead. She died at the age of 18 while a senior in high school from a “rare” childhood cancer, alveolar rhabdomyosarcoma. And the thing about having a dead child (well, one of the things) is that I am full of rage. Rage that must be acknowledged, ignored, hidden, managed, contained, revealed, suppressed and/or worked through on a daily basis. Every. Single. Day. Most days I do an okay job of keeping it at bay. I’m pretty sure people that see me regularly don’t observe my rage or feel its intensity. But every so often it gets tired of being politely masked and it comes unleashed. Like now, for instance. I have felt it brewing for a while and have been painfully aware of the things which have poked and prodded it out of its slumber, but still was unprepared for its dramatic appearance when I blew up at my husband for a completely unrelated matter. Once it was out, however, I quickly became its puppet, becoming numbly insulated from myself and going through the motions of an out of body experience, simultaneously feeling devastation, sadness, hopelessness, anger, helplessness and inconsolable pain.

And the last thing I need as I try to wrangle my grief induced rage back into the corral is to be repeatedly exposed to a raging, arrogant, misogynistic, hate generating xenophobe masquerading as a presidential candidate. It is beyond my comprehension how successful Donald Trump has been in his latest endeavor to rule our country with his iron fist and orange face. I am beginning to lose faith in humanity. I knew that racism still existed, on a personal and institutional level. I knew that there are people who fear what they don’t know and are angry. I knew that White privilege is alive and well. I knew that in spite of women being told, “You’ve come a long way, baby,” sexism still rears its ugly head. What I didn’t know, however, is just how many Americans are still clinging to those hurtful ideologies. And that scares me. And it also makes me realize how many of us are full of rage. Maybe all of us? I mean, some things should be raged against, right? Like injustice, violence, bigotry, rape, murder, cancer. Far be it from me to begrudge anyone their rage since I am so full of it myself. But I see Trump abusing his followers by tapping into their rage and welcoming it and giving it space to play out regardless of who it may hurt. And he does this for his own benefit. Again, it boggles my mind that anyone can believe a narcissist has anyone else’s best interest at heart. I could stay on my anti-Trump soap box all day, but in the end I don’t know that it will make a difference anyway, and the more I think about it the more my own rage expands. So I am left with once again trying to manage my rage while allowing it to be expressed. How the hell do I do that?

I’m not sure if my latest raging bullshit makes me more reactive to Trumpgate or if the political climate has contributed to my recent rage attack. Chicken vs. egg situation I suppose. But that’s the thing with the erratic rage of grief, every day we face situations which heap rubble, gravel, glass shards and sharp metal objects onto the trebuchet waiting to fling our rage into whatever happens to be in the way when the weight becomes unbearable. Thinking back on the last several weeks I suppose it makes sense that I was due for a release of rage….

February 10 –the second year anniversary of the death of my husband’s son, Ben.

February 14 – while most of the world celebrates Valentine’s Day, I will forever remember this date as the day we brought Claire home from the hospital to die, hearing the doctors tell us “There’s nothing else we can do.”

February 26 – attended the unveiling ceremony at Regions Hospital of the Donor Wall acknowledging those who have donated organs where Ben’s photo is displayed.

March 1 – the fourth anniversary of Claire’s death.

March 5 – the anniversary of Claire’s cremation and 20th anniversary of my father’s death.

Receiving a letter indicating I was denied the option to purchase life insurance because I had breast cancer four years ago, even though I am probably in the best health I’ve been in my life right now. Apparently I’m too great a risk and the insurance company thinks I will die too soon for them to make any money off me.

Business taxes.

And then there’s this, which is not a bad thing at all, yet evokes all sorts of conflicting emotions within me…. All of Claire’s friends are getting ready to graduate from college this year. I am so proud of them and happy for them as I hear news of them becoming journalists, educators, world travelers, musicians, activists, inventers, world changers…for the better! But the pain is indescribable as I am left to wonder what contributions Claire would be making to society and that she never got a chance. And she would have made such a positive impact. She had such a kind and loving heart full of passion for social justice and was an amazingly talented artist. To be honest it makes no sense to me that she was taken and someone like Trump is allowed to go on living and is damaging humanity in the process.

And so now my rage has calmed down for a time, turning into a dull headache after getting these words onto the page. When you see me I will smile and tell you I am fine but know that the rage always lurks and requires vast amounts of energy to remain contained.

Claire should be turning 22 on December 17. Her friends are getting ready to come home for Christmas as they finish up their final year of college. I imagine if she were still here I would have to stand in line to spend some time with her. I suppose she would be stressing over finals and anxious for the break to see her friends, celebrate her birthday and Christmas, and play with her cats; especially Raja, but Bill, too. However all I can do is wonder. Wonder what it might be like. I will never know that reality. I only know the reality of painfully navigating my own emotions at this volatile time of year and making sure our family continues the ritual of honoring her birthday with “dinner and a movie,” her final request which we were not able to fulfill while she was still with us in body. Obviously she is always with us in spirit. Some days this provides comfort and other days it only brings frustration and sadness. This year I will be out of town on her birthday because Dan and I will be relaxing on our honeymoon. I have mixed emotions about being gone, but we will celebrate her birthday as a family after we get back and Ellen arrives home to spend Christmas with us. Funny how I can feel like I am abandoning her by going on vacation over her birthday even though she is not physically here and will be with me just as much on the beach (or perhaps more!) as she would home in this unseasonably warm Minnesota December.

I wrote a letter to Claire on her birthday last year which I posted on her Caring Bridge site. I just re-read it and aside from the age specific details it communicates exactly how I am feeling this year so I’d like to share it with you:

December 17, 2014

Dear Claire,

Another birthday without you here.

This year you would be turning 21. Is it weird that even though you died when you were 18 I still think of you as continuing to age and I now see you as 21? So many other parents who lose children refer to their loved one as “forever 18” (or 15 or 7 or 2 or however old they were when they passed). To me you don’t feel forever 18. In my mind I saw you turn 19 and 20 and now 21. Maybe it’s different for me because you became an adult before you left us. I got to see you as an adult – I don’t have to imagine it. For that I feel very fortunate. But it certainly doesn’t lessen the pain.

Around this time of year I feel my grief looming. It first shows up as anxiety –the familiar churning in my stomach, heart palpitations and shortness of breath, feeling like I’m going to crawl out of my skin, wanting to scream, run, hide and disappear all at once. As the anxiety increases it turns into anger. First an undertone of irritation, then culminating into rage with no place to go. The energy needed to keep the anxiety at bay and hold back the powerful waves of rage exhausts me and I finally give in to the overwhelming sadness, feeling powerless, distraught and left with only my tears and sobs. Broken, once again, crumbling under the intense weight of loss and the missing piece of my heart.

But even as I write this, in the midst of my pain and my tears, I see you and I hear you beckoning me to a place of joy. Wanting to show me how happy you are now and how beautiful and healthy and complete. I feel your love for me. I feel your spirit. Your presence is apparent. I see you with my heart and I touch you with my soul. Wonderful and yet horrible at the same time because my physical being aches for your physical form – impossible and the reason for my inexplicable grief.

Feeling crazy as I hold such contradictory emotions all at once. Utter devastation and peace. Uncontrollable chaos and calm. Absolute resistance and acceptance. How can these things coexist? I do not know but I experience it every single day.

I wonder how you would want to spend your birthday. Would you let us buy you your first “legal” drink? I’m guessing you might not even like it – unless it was a strawberry daiquiri or Riesling – definitely something sweet. I remember your irritated glares when you used to complain about my red wine at the dinner table, letting me know loudly and clearly, “it stinks!” But maybe by now your palate would have matured and you would have been able to enjoy the right of passage into adulthood by ordering that first drink and showing off your license to prove you are of age. But I guess we will never know. Instead we are left to toast your memory when we go out for dinner and a movie in our attempt to honor your (literally) dying wish which we failed to do while you were still here clinging to life.

Flashbacks of birthdays gone by flood my thoughts – from the day you were born (or even before that when I would play with your moving limbs, gently pushing against them while they would internally glide across my abdomen, making me feel like an alien had taken over my body) to your final birthday celebration 18 years later where so many friends and family gathered at Obb’s Bar, all of us privately knowing it would most likely be your last, but none of us wanting to admit entertaining such a horrific thought. You taught us to live in the moment and make the best of whatever time we had. You danced that day, showing off your Xbox Dance Central moves and less than a week later were unable to walk because of that damn cancer. I can still see your mysterious look as you pondered your wish before blowing out your candles and I wonder what you wished for, although I think I know….

So happy 21st birthday my dear Claire. Please leave signs and reveal yourself in some way to us on your special day. You will always have my heart and I will forever be your mom.

I just updated my profile pic and cover photo on Facebook and now I am having a mild panic attack. You see, September is Childhood Cancer Awareness month and so I always “Go Gold for Claire” and use her picture as my profile pic during the month. Seeing as it is almost the end of October I figured it was time for a change. So I finally posted a picture of myself and Dan that was taken on our wedding day back in July.

I love my husband (still sounds weird to say after being together for 10 years) more than words can say and am happy to show the world our happy faces, but a part of me feels guilty removing Claire’s photo because her profile pic never changes. She isn’t here to change it. It will always be the picture of her blowing out her candles on her 18th birthday. Time stopped for her when she was 18. It also stopped for me and yet cruelly and wonderfully it keeps on moving forward.

I also decided to update my cover photo and replace one of the last family photos that was taken when Claire was still alive, four years ago now. It was taken shortly after she had finished treatment and before she knew she relapsed so we were all happy and hopeful. But everyone in that picture and everything about it has changed. Some relationships have ended, or at least changed in form, and new ones have developed. Claire’s beautiful and contagious smile is now only seen in pictures, never in person. And even though the rest of us continue to smile, a sparkle is missing because we have become intimately acquainted with death and grief.

But I felt the time was right to replace it with a more recent family photo, one also taken in July when Ellen and her boyfriend Jesus were here from Santa Fe for our wedding. Unfortunately Seth’s girlfriend Natalie is missing because she couldn’t be with us that particular day even though she is part of the family. But most noticeably to me is that Claire is missing and starting with March 1, 2012 will always be missing from our family photos. We change and grow and live and laugh and love and life continues to move on. But Claire is frozen in time as a senior in high school even though her friends are now seniors in college. I know it is irrational, but I feel so guilty and like I am betraying her or abandoning her or something by posting a family picture without her in it. I suppose the reality of it all just comes crashing down on me once again. She is not coming back. She is gone. She is still here but we can’t see her. She is with us and we feel her but I cannot get any new photos of her. Ever.

So I hope as people “like” my new photos they remember that someone is missing. I have four children, not three, and will always have four children. Unfortunately my current family photos deny that truth. So even though a picture may be worth a thousand words, those words may not tell the whole story.

Four years ago today, October 17, 2011. One of those defining moments in time that, in retrospect, revealed the beginning of the end. The beginning of the end of Claire’s life. We already knew the rhabdo beast had reared its ugly head again, producing tumors in her breasts. But the doctors encouraged us to go ahead and leave for her already scheduled Make A Wish trip on October 21, reassuring us that as soon as we got back we would determine a plan to deal with those tumors using radiation and maybe chemo; whatever it would take.

So why on that Monday while at physical therapy and Claire noticed when glancing in the mirror that the left side of her face drooped ever so slightly, did they not immediately assume the cancer was growing elsewhere? They sent her down for an MRI, thinking it could possibly be a stroke. When “nothing” showed up on the MRI, why were they so certain it wasn’t the cancer? Especially when they knew how aggressive rhabdomyosarcoma is and that MRI’s aren’t as effective as PET scans to detect the disease. They decided it might be something like Bell’s palsy, and once again told us to have a good trip and hopefully it would get better but we’d figure it out when we got back.

Were they wanting to protect us from anticipating the inevitable untimely death of a young woman barely on the brink of becoming an adult? Or were they in their own denial, wanting so terribly to believe that it might not be that bad? I don’t blame anyone. And none of it really matters because nothing could have stopped it anyway. But looking back on it four years later I have more questions now than I did then. Questions for which there are no answers.

And part of me longs to go back to that time, which fills me with confusion and guilt. Claire had to suffer so much, would I really want her to have to go through that again? But she was still here. I could still talk to her, hear her voice, hug her, hold her on my lap, watch tv with her, drive her around in the car, take care of her. Now there is just distance. And it keeps increasing.

I was shocked into the reality of how long it has been the other day when one of my graduate students told me she was born the same year as Claire. Wow. Time stopped for Claire her senior year of high school. But this coming December she should be turning 22. What would she be doing? Finishing college? Traveling the world? Living with a boyfriend?

Instead Claire was robbed of her future. As the cancer continued to progress, the doctors made it clear that it was Claire’s choice if she wanted to continue with treatment in an effort to slow down the progress or if she wanted to stop fighting. I wrote about Claire’s response to this option on December 29, 2011 in a Caring Bridge post:

“But Claire is very determined and still wants to fight back. After being posed with this option while talking with the radiologist, she stepped out to give us some privacy to think about it. I asked Claire what she thought about it and she said, crying, “I can’t do nothing! I have to do something – I want to graduate and I want to go to college!” Heart wrenching stuff. So many things that we all take for granted, to Claire are exceedingly difficult challenges which she has to fight for with every inch of her being. Please pray that Claire will be able to accomplish her goals and that things will ease up a bit – for at least a while. This is all very surreal at times, and yet it has become our life.”

I still live constantly in a surreal state. I cannot believe this has become my life. Most days I tuck it all neatly inside me where no one can see and I carry on as though life is enjoyable, normal and has meaning. But deep down I endure the stabbing pain with each breath and the broken heart of losing a piece of myself. And some days it catches up to me and shuts me down completely. This time of year is hard because it represents the beginning of the end. I relive it each year, processing it on a new level, and feeling the same churning anxiety and anticipation of doom.

Fall brings cool days and cold nights and more darkness. It is an exercise in futility to properly prepare emotionally for Thanksgiving, Claire’s birthday, Christmas, a new year, the Valentine’s Day reminder of being sent home to die and finally the dreaded anniversary of March 1 at 3:06 a.m. when Claire took her last breath.

And yet she lived her life right up until the end. Here is a peek into her final days which I recorded on Caring Bridge on February 20 (Seth’s birthday), just ten days before she died:

“Claire slept most of the evening and Hannah, Ellen and I just sat in the room with her (in between the nurse and Dan coming in and out and helping here and there). It was very strange and surreal to watch her sleep and at times labor in her breathing, wondering to myself, is this what it’s like to watch your child slowly die? Which breath will be her last? Will I be here for it or will I miss it? Will she wake up tomorrow and be improved or will tomorrow be the day when she can no longer hear or see or communicate anymore? Will she somehow have some kind of rebound and live much longer than anyone expects? We don’t know if we have days or weeks – is how the doctor put it. But knowing Claire, who knows? She just asked me yesterday about going to pool therapy on Wednesday! And she’s determined to keep those stupid braces on even now. She has a foot in both worlds right now. Her body is failing her as the cancer continues to take over and rob her of so many physical abilities. But her mind is very much alive and living – still making plans and making jokes and getting irritated (especially when we struggle to understand her because her speech has been affected). Sometimes she just sighs and says, “you have no idea what I just said, do you?” And then tonight as she was trying to pick out a Jamba Juice she says with wry sarcasm, “I suppose I should get the low-cal one, huh?” She is so thin and her tiny frame is so fragile.
This is so ridiculous that this is happening. I am so angry and so devastated and so numb all at the same time. I look at others who have survived and wonder why that can’t be us, but then I look at others who have lost the fight and I feel terribly presumptuous in asking that we be spared the same pain. Nothing makes sense to me anymore, but in a way I’m ok with that. I know many of you have ways of dealing with and/or explaining these kinds of dilemmas, and that is great. But right now we don’t need to be given any explanations, we just need to live through this experience in our own unique private ways.”

Turns out I missed her last breath. She chose to go on her own, alone in her room, with none of us around. I was awakened at 3:06 by an unidentifiable cry which I choose to believe was Claire saying goodbye. For some reason I felt compelled to stay in my bed and not go check out the noise. A little over an hour later, Dan went in to give her some meds and she was gone.

I miss you Claire. Every minute of every day. I don’t really understand the point of all of this or of life itself. But I will continue to try to live one moment at a time. If for no other reason than to honor you because you wanted so badly to keep on living.

When you have a child with cancer, social media can provide a wonderful lifeline of support. When Claire was sick I used Caring Bridge to communicate updates to the myriads of supportive people who were following her story throughout treatment (http://www.caringbridge.org/visit/clairefrick). I know many have also used Facebook to do the same. Living with pediatric cancer can be isolating at times and it is a good feeling to be able to post progress, concerns, happy milestones and requests for prayers and good thoughts and receive immediate comments of love and support, reaffirming the fact that you are not alone.

But on the other hand, sometimes comments received through social media can be devastating. I would hope that most people really do want to be helpful but sometimes things are said out of ignorance which can potentially make the parents feel worse not better. I remember one time after I had written an entry about how challenging things were and how it was so hard to watch my daughter struggle and be in pain, an anonymous person left a comment telling me I should just be thankful that she was still alive and I didn’t have an empty place at my dinner table. I believe I had expressed how thankful I was that she was still alive, but that didn’t negate the suffering she was enduring. And now that I have had an empty place at the dinner table for the over three years since Claire died, I still would never say to a parent who is watching their child fight cancer that they should just be thankful that they are still alive. It goes without saying that any parent whose child is fighting a life threatening disease is thankful every minute that their child is still breathing. But the cancer journey is still hard. Very hard. And painful. And scary. Scary because of the words we all dread to hear from the doctors…”I’m sorry, there’s nothing more we can do for your child.”

One of Claire’s last clinic visits at Minneapolis Children’s with mom (Jane), dad (Jerry) and Dr. Lori Ranney. (photo by Chris Polydoroff)

So when someone you care about is fighting this fight and hears those dreaded words, what should you say? What comments can you offer on their social media site that will provide the support they need at a time when nothing can make it better? And are there things that should not be said?

Unless you have experienced this kind of tragedy it may be difficult to know how to respond. Here are some practical things to consider which may assist those who want to be helpful but not hurtful. Let’s start with the things to avoid:

Do NOT offer Advice. Forget about suggesting the latest miracle cure fad such as cannabis oil, a special diet or something you heard about on the internet. Trust me, these parents have already turned over every possible stone to find a cure for their child. If a cure existed they would have found it and used it.

Do NOT resort to Platitudes. While some popular sayings may have meaning and truth for you, now is not the time to tell a parent who is about to witness the death of their child that “Everything happens for a reason,” or “This is God’s will,” or “At least their suffering will be over.” This is not to say, however, that they have given up or have stopped fighting for their child. I would imagine most parents hope for a miracle up until their child’s last breath. I know I did. But I also knew the reality that my daughter would not continue to live. I saw her decline. I saw her slip away from us slowly.

Do NOT sit in Judgement. Refrain from questioning any decisions the parents or family members have made. Parents in this situation second guess themselves enough. Worries about whether or not they did enough to save their child will haunt them the rest of their lives. The last thing they need at this time is to have others challenge their choices.

And on a positive note:

Show Compassion. Speak from the heart and share your sadness and depth of emotion that they are going through something so difficult. The harsh reality is that this is a situation that cannot be fixed, so suggesting possible solutions is not appropriate. But what can help is that they will know they are not alone because there are those who are willing to stand with them in their pain and sorrow and sadness and fear.

Express Concern. Tell them you are thinking about them or praying for them. But be sensitive to the cultural and spiritual beliefs and practices of the family going through this. If prayer is meaningful to them, offer to pray for them. If they are comforted by Scripture or religious writings, quote them. But if they are atheists, use non-religious terms. And if you are uncertain about their beliefs try to use neutral language and avoid quoting Bible verses because it might feel “preachy” to them instead of bringing them comfort. Be respectful of their beliefs and values, especially if they differ from your own.

Commend them for their conduct. Offer encouraging words of affirmation to let them know they are doing a good job as parents and you know they love their child more than anything. Acknowledge that you trust them to do what is best and validate their decisions as they are theirs to make. Parents and families facing this situation are most likely exhausted at this point – physically and emotionally. They need affirmation, encouragement and unconditional love.